Safe Harbour

When you live with an autoimmune disease like lupus, your overall health and well-being is usually in an ongoing state of flux.  I don’t expect to feel crummy when I wake up in the morning.  I never take for granted the days without complications or reminders of my limitations.   Some days, however, I wish there was a safe harbor where I could go for rest, comfort, love and reassurance.  Life with lupus is often an unpredictable crap shoot.  And the long-term odds are never on the side of the  patient.

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A good day for me is when the medicine is working, pain is manageable, the weather cooperates and the mind is untroubled.   Most of the time I am optimistic.  Most of the time I am fully engaged in the here-and-now.  Most of the time I can laugh about almost anything, especially myself.  I feel creative, energetic and productive.  When I can reach out to help someone in need, I am acutely aware of the blessing and grace that enables me to give.

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There are other days when I feel vulnerable and exposed.  Today is one of those days.  I hate the way that makes me feel.  I resent feeling weak.  I walking with a limp.  Anemia gives me a pasty complexion.  The cutaneous vasculitis lesions continue a slow, persistent march across my torso and extremities, despite all the drugs and all the infusions.  I have bruises in unexpected places, courtesy of steroids.  Chemotherapy and steroids have taken their toil on my appearance.  Sometimes I feel as dumb as a box of rocks …  “lupus fog”  caused by small vessel vasculitis or middle age or heaven only knows what else.  I see all too clearly the downward slide of  my baseline health and it scares me.

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I often wish for a safe harbor; a loving partner who would comfort and reassure me during storms caused by lupus.  I hear stories about how spouses pair up for doctor appointments or keep watch at the bedside of their loved one in hospitals.    Someone who keeps their promise in good times and bad.   A partner who is willing to  clean and shop when the other one is too sick to handle it alone.   What does it feel like to be loved for who you are, with or without a chronic disease?  Will I survive without this type of love?  Of course.  Would it really make a difference when lupus has the upper hand?  I wish I knew.

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There are other types of safe harbors in my life … my home is often a refuge.  I love to read and can easily get lost in a good story.  When I’m buzzed on steroids, I often set about cleaning out dressers and drawers.  I don’t take my friends for granted and truly enjoy the safe harbor of their company.  For years, I have spent quiet weekends at home, and don’t think about the fact that I’m alone.  But on bad lupus days when it’s painful to walk and getting out of bed is a big ordeal, I wish my life was different.  I wish it wasn’t so hard to reach out to people instead of opting for self-imposed isolation.  I don’t want to expose my insecurity.  This is my pattern when lupus has the upper hand.  Maybe there is no such thing as a safe harbor when I feel like crap.

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I have insecurities and fears, just like everybody else.  I am also a strong, intelligent, independent woman who appreciates the blessings in my life.  I’ve been divorced, unemployed, raised a child on my own and started my life over more than once.   And I have faith to keep trying.

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I have lupus.  And some days are not easy.

30 Things About My Invisible Illness You May Not Know

I’m posting this Meme in support of  National Invisible Chronic Illness Awareness Week.

1.  The illness I live with is: Systemic Lupus.  I also have Sjogren’s Syndrome, autoimmune hypothyroidism, and fibromyalgia.

2.  The year I was diagnosed was: 1992.

3.  I had symptoms since: I was 9 years old.  Nobody knew what was wrong with me at that time, except I was anemic and tired.  In 1989 I began experiencing additional symptoms that went undiagnosed for several years.

4.  The biggest adjustment I’ve had to make is: Accepting my limitations, avoiding sunlight and knowing that my health is tenuous, at best.

5.  Most people assume: That aside from gaining weight (from years of chronic steroids) I look relatively healthy.

6.  The hardest part about mornings are: Not knowing if I will be able to move without pain.

7.  My favorite TV medical show is: House … mainly because it’s smart and funny.  But also because according to Dr. House “It’s never lupus.”

8.  A gadget I couldn’t live without is: Well, it’s not really  a gadget, but I couldn’t live without my sunglasses.  I even have tinted glasses to wear inside when my eyes are really bothered by certain lighting.

9.  The hardest part about nights are: Being in pain and having difficulty falling to sleep.  Feeling alone and isolated.

10.  Each day I take: 14 pills in the morning and 6 pills at night.  And every three weeks I go to the hospital for infusions that take all day.

11.  Regarding alternative treatments, I: would like to try acupuncture if I could afford it.  Therapeutic massage is beneficial when my skin isn’t combating vasculitis.

12.  If I had to choose between an invisible illness and a visible illness, I: have had both and would like to have neither.

13.  Regarding working and career: I’m just trying to hold on to the job I have now.  I used to think I had a career when I was in my 20’s and 30’s.  That was a while ago.

14.  People would be surprised to know: the amount of time and energy it takes to do what used to be routine things in life, like grocery shopping and cleaning.

15.  The hardest thing to accept about my new reality is: there is no cure for my disease.

16.  Something that I never thought I could do with my illness that I did: was be able to travel.

17.  The commercials about my illness: do not exist.

18.  Something I really miss doing before I was diagnosed is: Spending time outdoors in the sun and swimming!

19.  It was really hard to give up: my independence.  There are certain things I just can’t do and have to ask for help.

20.  A new hobby I have taken up since my diagnosis is: Blogging about having lupus!  Also knitting AND painting.  I’m a beginner at both but thoroughly enjoy the creativity and challenge.

21.  If I could have one day of feeling normal again, I would: spend the day at the beach, walking along the shoreline and searching for sea glass.

22.  My illness has taught me: patience and humility.

23.  Want to know a secret?  One thing that people say that gets under my skin is: “You look so good today!  You must be feeling better!”

24.  But I love it when people: ask if they can help, make me laugh, and let me help them when I can.

25.  My favorite motto, scripture, or quote that gets me through tough times is: “When you get to the end of your rope, tie a knot and hang on!”

26.  When someone is diagnosed I like to tell them: You are not alone.

27.  Something that has surprised me about living with an illness is: how many people expect you to carry on as if you had no limitations.

28.  The nicest thing someone has done for me when I wasn’t feeling well was: More things than I can list!  I am blessed with kind, thoughtful and caring family and friends.

29.  I’m involved with Invisible Chronic Illness Awareness Week because: I have systemic lupus and want to raise awareness about not only my disease, but about all invisible and chronic illness.

30.  The fact that you read this list makes me feel: very grateful!  Thank you!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers September 14-18,2009 at www.invisibleillness.com

So Here’s The Thing …

Where have I been for the last month?  Did not fall off a cliff.  Was not deported.  There is a story to tell and on the Lame Story Thermometer it’s quite impressive.  So here’s the thing …..

I could tell you I’ve been in mourning since Michael Jackson died.  Well, I did watch the memorial service.  And the Jackson 5 movie.   Does that count?

I could also tell you I’ve been very busy painting.  Except  I have not been painting much. But I did think about my current project .  It started out like a sunflower on steroids and LSD but somehow it wandered down the path of extreme butt-face ugliness.  After a coat of white paint to cover up the abstract monstrosity, I began work on what may perhaps be an even an even uglier abstract monstrosity with blues and yellows.   In the meantime, I have a towel flung over the canvas so I don’t have to look at it.

KINDA THE LOOK I WAS AIMING FOR

My sister recently had heart surgery to replace her aortic valve.  She was born with a bicuspid valve; an inherited swimming-in-the-shallow-water genetic fluke.  So now she has a bovine (moooooo) valve and will soon be able to chase grandchildren around the yard.  Last week I did spend most of my spare time at the hospital.  Her doctor noted that since this is inherited, her children and siblings should get a complete medical workup.  I’ll put that on my list of things to do.  Later.  Today she was discharged from the hospital and is happy to be resting at home.  Her short-term goal in life at the moment is to be well enough to go to the American Idol concert at the end of August.  I’ll be happy if we score a great handicap parking space.  Ya’ll think the sympathy factor would get us a backstage pass to meet Adam?

BAD VALVE

GOOD VALVE

Last month we relocated our medical office to a new hospital campus.  Moving is hard.  So is packing.  Packing AND moving totally sucks.  But I’m a stoic individual who didn’t want to look like a complete middle-aged chicken shit wuss with lupus who can’t lift heavy boxes.  I usually save that approach for non work-related catastrophes.  However, I’m an idiot and I did overdue things.  Now my neck feels as supple as a redwood tree.  Maybe I will join the gym after all.  On second thought …

ME CARRYING HEAVY BOXES WEARING SANDALS??

Also last month I went to visit my son and daughter-in-law.  Hung around the farm they live on;  spent time at the sand beach, went to a movie and attended an open house where Matt was in charge of a wild edible plants exhibit.  Nothing quite like tasting garlic mustard pesto and cattail hearts.  However, I did have a super time.  And a little FYI for you moviegoers out there.  Do not watch the new Sasha Baron Kohen movie “Bruno”.  Quite the bizzare experience watching full frontal male nudity and a swinger club party on the big screen with your family.  I wanted to disappear like the prophesied Rapture in the bible.  Turn your head and I’m gone in a flash.

PLEASE GOD GET ME OUTTA HERE

On the lupus side of my life, I’ve had three infusions so far.  I get them every three weeks and am grateful to have a course of treatment that works like magic.  Mind you, IVIG is not a cure for lupus.  I’m in the very small minority of people with refractory response to conventional medications.  The last week or so has been hectic and my body has been telling me to slow down, stay out of the sun and heat and rest.  I did try to listen and managed to cut back on cleaning, etc.  As a result, the house is a mess and the laundry is piling up.  But that’s life with lupus.

Ego venit ego vigilo ego confero. I came, I saw, I wrote.

It’s good to be back.

A Small Miracle

At long last, my insurance carrier approved my IVIG treatments for lupus, retroactive from September last year through June 2010.

I feel like I won the lottery …  or at the very least, was granted a small miracle. 

The road to these much-needed and long-overdue infusions has been long and crazy!  Last month I was preparing for the formal second level appeal with my insurance carrier … the main reason I barely posted anything.  My illness was flaring and I was a certifiable mental case.

But I held steadfast to the belief that things just had to get better.

Next thing I know, a big whopping envelope from the insurance company was in my mailbox … a 200+ page collection of papers  regarding my treatment history, research documents about cutaneous lupus vasculitis studies, prior appeal letters from my doctors requesting approval for IVIG, etc.  A final (and formal) appeal teleconference hearing was scheduled on June 1st at 11:00 am.  In attendance would be the insurance case manager, a panel of physician Medical Directors that specialized in rheumatology, my own rheumatologist … and me.

The teleconference seemed to be over before it started.  The panel asked for my input and I blithered something senseless about “needing these treatments.”  The panel asked my rheumatologist an array of questions, which I didn’t really understand.  I didn’t understand my doctor’s answers, either.  Something about B cells and hyperclonality and other things I never heard of.  I work in the medical field and this was way over my head … which was pretty scary. My doctor was amazing and spoke with great conviction.  When the panel asked him if he was aware of additional peer reviewed clinical trials with a larger patient population of refractory SSA antibody positive individuals with cutaneous small vessel vasculitis, he politely told them that my circumstance was quite unusual.  Broad based clinical trials would be difficult to conduct because there just are not that many people with the condition I have.  He said that in his 30 years of medical research, he has not seen a case as severe as mine.

If nothing else, I knew he gave this his best shot!

Of course, I was mentally prepared for the appeal to be denied.  And I was prepared to file a complaint to the state board of insurers.  If they upheld the insurance denial, my last option would be to contact the pharmaceutical company that makes IVIG and ask them if they’d let me have it on a “compassionate care” basis.

You can imagine my surprise when the following evening my phone rang at 9:00 pm.  It was the case manager from my insurance carrier calling.  She thought I’d want to know that after the teleconference appeal, the panel assigned to my case approved my request to receive IVIG for 12 months!

Sometimes persistence and a bad-ass attitude gets the job done!

Most of the credit for this decision goes to Dr. Terry Moore, my rheumatologist … and all-around Bad-Ass Doctor.

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I wish I could tell you I feel wonderful.  Physically, my condition is deteriorating.  I can’t really spend any time outside because it’s too hot and too sunny.  Being stuck in my house is depressing at times.  I  started an art project, and took up knitting, and found a couple good books to read, but nothing takes the place of having the freedom to go outside and take in the sunshine.  With a little luck, I’ll be well enough to travel to Wisconsin next month for a long overdue visit with my son and daughter-in-law.  There may be time for a visit to the sand dune beach  – in the late afternoon, of course.

Last week I had my first infusion.  Every three weeks I get to go to the cancer center, get hooked up with a needle and a bag a medicine, and spend the day in a chair.  Thrilling it ain’t.  But I’m grateful for the only treatment out there that will fight off the lupus attacks that have ravaged my body.

I have lots of hope, however.  And I’m thankful for this little miracle … even if it comes with a $2,000 deductible!

World Lupus Day

May is Lupus Awareness Month.  May 10 is World Lupus Day.

A few days ago, I started experiencing the all-too-familiar signs of a lupus flare ramping up.  My joints started aching, and I started having hives around my hairline and neck.  Sure enough, I woke up with my skin feeling like it was sunburned.  When I got out of bed, I noticed my thighs were covered with red blotches.  My back and arms were red and lumpy.  My feet and shins had new vasculitis lesions.  I was covered in sweat and running a low grade fever.

There’s nothing I can do about this flare.  I just have to deal with it and hope it doesn’t get worse like last year.  I’ve blown through all the pharmaceutical options to treat lupus.  My insurance carrier is reviewing a “second level” appeal from my doctor for IVIG therapy.  It is the only therapy that works for me.  If this second appeal is denied, I will be out of luck.

Did you know that in the last 50 years, there have been no new drugs developed specifically to fight lupus?  Currently, the only drugs on the market used to specifically treat lupus are Plaquenil, prednisone and aspirin.  How pathetic is that?  Instead, doctors have had to use “off label” medications like chemotherapy and other immune suppressors to fight lupus. All have toxic side effects.  Sometimes I don’t know if the drugs are worse than the disease itself.

The video  below is entitled  Faces of Lupus. Pray for a cure.

The Little Big Things

As a good friend told me this evening, I manage tough situations by “visiting” them from time to time; I don’t stick around for long stretches of despair.  I never thought of it that way, but she’s right.  I don’t like to wallow.

Life’s been a little harder than usual lately.  My heart is tethered to people I love but can’t seem to help.  I’m frustrated about personal situations  I cannot seem to change.  And of course there’s health-related challenges.  Lupus crap is always just below the surface of everything, waiting to get worse.

But today I’m giving thanks for the little things in life.

Sometimes the little big things are enough to keep me going.

Such as …….

A perfect day at the beach

*   Fresh 600-count sheets on my bed.

*   New socks.

*   YouTube crazy cat videos.

*   Silly phone messages from my son.

*   Tickets to see James Taylor next month.

*   Taking stuff to the recycling center.

*   Reading a great book.

*   Somebody else cooking dinner.

*   A new shower head that feels like a spa experience.

*   Putting all the groceries away, the laundry folded, and a clean house.

*   Getting a hug from a favorite three-year-old, who just said “I love you.”

*   A new bar of shea butter soap.

*   Eight hours of sleep.

spring poppies

What are the little big things in your life?